Like every other healthy set of parents-to-be, poised for the next step of our so-called normal lives, my partner and I expected your stock-standard, run of the mill, ‘nothing to see here, folks’ baby. We expected a little boy, plain and simple, ten fingers and ten toes. We did not expect his heartbeat to unexplainably stop in the birthing suite, or the frantic rescue mission into my uterus that would save him, but leave his brain severely damaged. ‘We’ll have to wait and see what this means’, said the doctors. Six months of unmet milestones later, our son Arlo was diagnosed with quadriplegic cerebral palsy.
What came next was something of an emotional tsunami
Tidal waves of dogged denial, wretched devastation and everything in between. The idea that my child may never walk or talk was completely unacceptable – unthinkable – and so I buried my fear in an entirely self-serving project. I donned my journalist cap, reached out to dozens of parents across the globe, raising kids with all kinds of disabilities, and begged them to help me. ‘What did you do to feel better at the start of this gig? How do you feel now? Tell me this isn’t what I think it is.’
Many of the parents I spoke with are raising children with autism, including Jocelyn Moorhouse. She and her husband, P. J. Hogan, are the filmmakers behind titles such as Muriel’s Wedding and The Dressmaker. They have four children, two of whom Jocelyn affectionately calls her ‘autistic darlings’.
‘Part of you goes, “It’s not fair! I wasn’t ready for this, I didn’t sign up for this!”,’ Jocelyn told me. ‘But of course, no one signs up for this … and we had to go through a stage of grieving. It’s grieving for what you imagined your future was going to be. That’s all it is. You’re not grieving the child – they’re still with you – you’re just grieving your dreams. You have to build new ones. And you will. You will build new ones.’
While waiting on those new dreams to emerge, however, many parents suffered the slow and painful deaths of their old ones – Australian television presenter and model Chloe Maxwell, for one. Up until her son, Max, was diagnosed with autism, Chloe was very exacting in her designs for this three-year-old.
‘I guess I was most fearful, selfishly, of him not living up to the dreams and expectations I had for him,’ she said. ‘I wanted to see Max get married and achieve things in life. I wanted to experience these milestones with him and I didn’t see that coming to fruition … I was also worried he would struggle to make friends and enjoy his life the way I had imagined he would.’
But Chloe’s dreams are not Max’s dreams. His dreams are arguably more ambitious. Now aged 12, he plans to become a genius, no less, and build robots. ‘That’s his dream for now and I encourage him where I can,’ said Chloe. ‘Max may well decide to be an astronaut and develop a time machine next week, so we’ll wait and see. His dreams change regularly and so I have learned to go with it.’
This idea of creating new dreams came up in many of my chats with parents, regardless of their child’s particular disability. But some of what I learned was quite specific to those raising kids with autism. The hormonal response to chronic stress experienced by mothers of children with autism, for example, has been likened to that of combat soldiers. They have also been found to spend at least two hours more each day caring for their kid than your average parent – so it’s little surprise that meeting the prescribed quota of at-home therapy hours feels near impossible.
‘Relax,’ said Julia Coorey, who blogs as Michael’s Mum and is currently in the throes of opening a new ABA school in Sydney. ‘You are not going to suddenly run out of time. Don’t do everything at once. You will only confuse your child and put yourself and your finances through the wringer. There’s no deadline. It won’t be “too late” past age three or age five or what- ever. Children are always developing and always learning, they don’t suddenly stop.’
Advice like this really took the edge off those early months and years of navigating Arlo’s disability. And there’s plenty more where that came from.
Special combines over 50 honest and uplifting conversations with parents and professionals in the disability sector. It’s rammed full of real stories, expert advice and (easy) exercises to tackle the unspoken obsessions at the forefront of a newly minted special-needs parent’s mind, such as: Why has this happened to me? Will I ever be happy again? Will my child’s life be worth living? Will I ever stop comparing my child to typical children? Will I ever work or travel again? How will my relationship survive this? Should I have another baby? And the big one, what will my future look like?
It also explores the language to use when talking with interested (or ignorant) parties about your kid, because the conversation around parenting a child with disability needs to be louder. And less awkward.
My hope is that Special will do for other parents what it did for me. I hope it gives them some comfort, some fresh perspectives, some strategies to turn around negative thinking and the knowledge that while they might never have felt more alone, they are in very good company.
freelance arts, lifestyle and business journalist.